How We Learn Lessons That Suck. 4/24/13

posted Apr 24, 2013, 11:56 AM by Kathryn Simpson

Part 1: Medical Speak vs. Joe Q. Public, and the Value of Professional Cat Herders

There are certain things in life that we know. These are the "known knowns," as Herr Rumsfeld says. Among those items are the fact that sometimes people get sick or broken and there are medical persons who may be smart enough to fix the damage. Please note I'm hedging with a "may be smart enough..." because certainly there are no guarantees. Sidebar: In this increasingly litigious and paranoid society, the smart medical persons can barely even suggest they might have a remedy for fear of their words constituting some kind of verbal contract that leads to a future malpractice suit. But I'm not a lawyer and sidebars just encourage me to rant, so let's focus on Part One's narrative. That being, we know getting sick means doctors and nurses will try to help us get better.

One week ago today my mother had a health crisis. I will not go into all the gory details because my mother is a very private person, but suffice to say Thister* had to make one of those late night phone calls to tell me Mom was being airlifted to a hospital near St. Louis. Husband and I threw a bag together and raced south from Chicago. Tests were tested. Scans were scanned. LOTS of blood was drawn and etcetera etcetera.

As a family, we are not newcomers to hospitals and various medical procedures. Heart disease we're familiar with (it led to my father's death at age 60 in 1995). There are several assorted immune system diseases of which we have more than a passing knowledge (I was diagnosed with Multiple Sclerosis in 2010, and Thister's ex-husband has been battling psoriatic arthritis since he was a teenager). Like nearly 26 million other Americans**, both our parents have/had Type 2 diabetes, so we thought we had a grasp on what that disease requires as well. Alas. By early morning following Mom's situation, Thister and I realized we were very much fish out of water. The list of things we didn't fully grasp about diabetes was pretty huge.

I don't think Mother will mind if I tell you she suffered a bi-hemispheral punctate. I think mostly because we're all so pleased we've learned how to pronounce it that we keep saying it over and over again. Basically, she had a stroke. On the relative scale of strokes, this was small. That's blessing #1. Blessing #2 was that Thister was in the house with Mom when it happened so she was able to dial 911 and get first responders there very quickly. Mom was able to receive medical attention in short order. Anybody who knows someone in Stroke Territory knows rapid response is crucial. If Thister hadn't been there.... Well, I don't have to tell you I'd be writing a very different blog right now.

But back to lessons learned. There we were in the hospital. We knew the neurologist and the nurses and everyone else was there to get Mom stable, and then to develop a game plan for her recuperation and rehabilitation. But Medical Speak is not the same as Joe Q. Public Speak. This is where I started to realize the absolute truth in what my dear Aunt-In-Law Lisa has always preached to us. Get a patient advocate. Talk to a case manager. Make sure you understand exactly what's going on with the medical process. Make your voice heard.

Now, Aunt Lisa spent her entire professional career in nursing, so I've always known she knew what she was talking about, but I never felt it necessary to put her advice into action. Until this past week. What we began facing at this facility was communication static between Mom's neurologist, the Physical and Occupational Therapy teams and the appointed "hospitalist." A hospitalist, it seems to me, is a doctor who's supposed to coordinate care and then get the patient discharged as quickly as possible. I may sound flinty, but this particular person was suggesting to Mom 24 hours after admittance that she was going to release her to go home. Like, home home. Where she lives alone. After just suffering a stroke, and against the neurologist's written instructions. I'm not entirely a putz and I recognize Mother was not their only patient, but I do think it's a good idea to completely read a patient's records before you start talking about sending them home alone. It diminishes the authority of the specialist (the neuro, in this case), and makes the patient suspicious of all the conflicting recommendations and possibly gives them false hopes over their current condition and the need for further treatment.

In this particular experience, the miscommunications continued to escalate over several days, as did Thister's and my anxiety and Mom's frustration. On Sunday morning I put Aunt Lisa's advice to work and literally marched to the front desk and asked for Mom's case manager (I promise I was very polite). The punctual weekend case manager met with Thister and me not twenty minutes later, and I think that's what really turned the tide for our confidence.

I've decided case managers are basically under-utilized cat herders. They speak Medical Speak, but they also speak like Joe Q. Public. And better still for our situation, the case manager understood how to communicate with my mother. Social worker to social worker, basically, and I believe that was a tremendous boost to Mom's spirits. Between the case manager, the nursing staff and the neurologist...I owe that wing of the hospital more than a box of cookies. I may well owe them my mother's longevity.

So that's one lesson learned that sucks. In medical situations, crisis or not, you must take a deep breath and find the liaison who can translate all things for all sides. You must express your concerns, and you must be certain all the different departments are communicating clearly. The bigger suck of this is, of course, when you or a loved one are sick/hurt, the last thing you want to worry about is being an ambassador. You want to focus on yourself or the patient. But the fact is you MUST be involved. When you're not, or when you don't understand what's happening, that's when things can slip through the cracks. Here's a worse case scenario:

Like I said before, diabetes is not a new thing in our family. I am fully confident that anyone who reads this knows at least one if not five or more people who are dealing with it, too. But what I didn't know is exactly how much damage the disease can do if not rigidly controlled, and what signs show it's gotten out of control.

Thister and I talked A LOT with the neurologist about how Mom's diabetes played a role in this episode, and what it all means for her future health. Here's the deal (and forgive me if I'm preaching to the choir). If not treated with a strict regimen, prolonged excessive blood glucose can damage any and all aspects of the body. Heart, eyes, extremities, guts.... It's all up for grabs. Read Livestrong and Mayo Clinic. Too much sugar in our blood over a long period of time can literally turn our blood into sludge. Think about putting sugar in a gas tank (although I'm sure none of my readers have ever done that....). Same thing. If blood can't flow smoothly, or gets bogged down because it basically has the consistency of maple syrup, it can't deliver oxygen to capillaries and smaller vessels. The longer those tiny roadways go without oxygen, the more damage is done. They essentially asphyxiate. See Medline Plus. Now Thister and I must acknowledge there was evidence of some of these things before Mom's punctate. We just didn't know enough to connect all the dots.

We all went into this crisis with just enough information to not do enough to prevent it. Does that make sense? Diet alone is not enough to protect a diabetic from neuropathy or any of the other potential side effects. If a diabetic isn't diligent to the point of complete OCD about maintaining their regimen, they're opening themselves up to health problems far beyond the tedium of finger sticks and daily prescription medication.

We didn't know this before. Not really. Not in a visceral way. But now we do and it sucks. Lesson learned the hard way.